Is ME due to Ehlers-Danlos Syndrome "stretchy veins"

I dont have ANY of the main symptoms of EDS, (hypermobile joints or elastic stretchy skin etc) so whilst i think that the conditions could overlap, i do not think that EDS is the 'cause' of M.E for more than a handful who have been misdiagnosed.

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Justy,
Permeability of your BBB or gut or mucosal barriers might still be an issue. Even if you technically don't have EDS. You wouldn't have to have overtly weak tissues, hypermobile joints. These issues would fall under connective tissue disorders. Weak tissues could be anywhere in your bodey. There is a major controversy about blood hypoperfusion to the brain as a reason for MS. There are some patients who swear angioplasty of the jugular veins has reversed their conditions. We shall see..

justy A lot of people are not aware that alcohol activates a lot of pro-inflammatory hormones. The mechanism is via a release of arachidonic acid from the cell membranes in the presence of alcohol. These molecules are immediately converted to hormones, many of which cause inflammation and pain. This can be masked by the numbing effect of alcohol, but I suspect that in us the problem is magnified. Which mix of hormones are produced would depend on a given persons individual chemistry, and that would vary tissue by tissue. While there are many theories of alcohol poisoning, it is drugs that stop this arachidonic acid chemistry that prevent death from alcohol poisoning.

Just for the general discussion, as I said to someone recently I have the flexibility of an average garden gnome. However I have huge hands. One of my sisters is hyperflexible. My mother had huge issues with varicose veins, requiring surgery. Is there a genetic link? I don't know for sure, but I can't rule out the possibility.

...Currently I think EDS could define a subset of ME. However I do wonder if most with ME have something similar. We have vasoregulation problems. We have elevated elastase in ME which might cause the blood vessels to be stiff and unable to exand. Thats not EDS, but the net result to blood supply regulation would be similar - a reduced capacity to compensate for changes in blood supply and pressure.

I hope to say more when I have finished reading this thread. My best current guess is that even ME is at least two different diseases, while CFS could be a whole lot of diseases (depending on definition used). EDS could well underlie one of those two groups in ME.

The other possibility that comes to mind is that if ME symptoms are derived in part from disease induced changes in blood vessel regulation, having EDS at the same time will massively increase the risk factor for getting ME. It also might increase the severity of the disease.

Bye, Alex

PS For a long time I have wondered if ME might occur much more often when pathogens cross the blood brain barrier. If connective tissue disorders facilitate this, then the risk factor would be multiplied in EDS patients and other disorders that might weaken the BBB. That would mean EDS is probably not a cause, but its a major predisposing factor. It might also mean that many with EDS might really have the same ME as the rest, just be a different subgroup, just as we might have Lyme subgroups or HHV6 subgroups.

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Thanks Alex,

All good points. Speaking as one of those with EDs, I can respond from experience and testing but I'll leave the theory to you!

So EDs is something I inherited and, yes, there were subtle symptoms all my life, but extreme OI came virtually overnight--not in my case from a virus or acute illness (though I am postitive for most of the suspect viruses and pathogens, so somewhere they were undermining the "terrain"--but after a week of extreme physical activity. Maybe glutathione took a plunge, maybe....?

I did have high elastase, but that doesn't seem to be related to EDs because it is common in "non_EDs patients as well, and mine normalized with treatment (GcMAF, Nexavir, LDN...).

Another interesting thing in my case, is that vagus nerve dysfunction is closely related to my level of OI. My TTT "with frills" showed vagus nerve dysfunction along with many other things. For the last couple months I have been seeing a visceral therapist and without telling her anything, she said that my vagus nerve was not functioning well. After several treatments, my OI is improved--for a couple of days after a treatment it is gone. Slowly the effect seems to be "holding" longer.

Permeable BBB related to connective tissue problems is also very interesting. And yesterday I posted something from a sinus site, saying that connective tissue may be related to sinus problems--one of our common bugaboos.

So yes, I'd say a big predisposing factor for those with EDs, but "causation" seems a lot more complex.

On a completely different note a question about a strange symptom i have has popped into my head while reading through this thread. Does nayone else get severe pains in their legs as soon as they drink even a small amount of alcohol? could this be to do with the bood vessels dilating. 9i dont drink anymore so its not an issue, butcant find anyhting on the interent about it.

all the best, Justy x

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HI Justy,

No iI have never heard of that pain in legs after alcohol sorry
I feel generally bad after drinking alcohol - even a glass of wine - which I now believe is due to the vasodilation.
If i drink wine together with food with msg i get a weird numb feeling in my legs but i would not call it pain,
Can you describe the pain more and say where it is ....or would that involve another drink ...
he he?

...as I said to someone recently I have the flexibility of an average garden gnome. However I have huge hands. One of my sisters is hyperflexible. My mother had huge issues with varicose veins, requiring surgery. Is there a genetic link? I don't know for sure, but I can't rule out the possibility.

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Hey Alex,
Thanks indeed.
I have no hypermobile joints or stretchy skin either but the genetic link... esp in first degree relatives .. was a MAJOR part of my diagnosis. I have always been really stiff and inflexible so dismissed this as not applying to me at first too. Bu t so many of my family members can touch their nose with their tongue, I have mild varicose veins on the left le whidhis the side all my clumsiness started showing in first.

If I did not thing my diagnosis fitted I would say so but all the logical treaments based on it ...eg avoiding heat, and symptoms like disliking standing etc really help me as guidleines when I follow them so I am pretty sure it is right for me.

Thanks Alex,
...
Permeable BBB related to connective tissue problems is also very interesting. And yesterday I posted something from a sinus site, saying that connective tissue may be related to sinus problems--one of our common bugaboos.

...
Sushi

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On this point,

My neurologist queried CSF leaks for me and I note EDS can cause the meninges to suffer constant small tears which would lead to leaks. Apparently it can be sometimes deteced on MRI wiht contrast; I have had one and am awaiting the results.
Cheers

Anyone reading this thread & considering they may have fragile connective tissue due to a genetic reason, should not only consider Ehler's Danlos Syndrome as a possibility. Marfan Syndrome & Loeys-Dietz Syndrome are also possibilities.

People with Loeys-Dietz Syndrome are not necessarily hypermobile.
One feature of Loeys-Dietz Syndrome I find interesting is:

On reading this i realised two other symptoms I have .. flat feet ( which my father also had) and rice paper scarring I think it is called; I have a couple of cut that healed up with a large soft white area of skin in them and read that is a symptom of EDS... I always thought the one on my knee was because I should have had is sutured that it had such a wide scar for no apparent reason, but it could be this.
)Why do flat feet disqualify you form the army does anyone know?... Is that even true?)

[quote="alex3619,
If we have a psychosomatic illness because a physical illness cannot be objectively shown, how is a psychosomatic illness any more valid since it cannot be objectively shown?
Bye, Alex[/quote]

I like the logic of your sigature (above) Alex, and it has occured to me that there is also no test for a hangover... which thus cannot be objectively shown either...., but everyone believes hangovers are real.

I dont really seem to have this very strong correlation between upright and crashes etc. I am not a POTSY type at all. as long as i am sitting and resting i am ok, slow walking is fine. For me it is any overactivity that causes the crashes, including exercise whilst reclining and also mental exercise.

...

all the best, Justy x

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Thanks for this Jusy, so are you saying that if you went for a slow stroll ...of say about an hour.... on a hot day... and that was all you did that day...that would not cause you any ill effects at all in subsequent days?
Do you dread queues?

One this I do is walk my cats ... for me that means a few steps then waiting for five minutes while they stop and explore a garden or have a wash. I can feel when i do this in the evening that it is not good for me - better to walk briskly I think. or better , cycle. This mornin I took Gracie for a walk before breakfast and I had woken up feeling OK but afterwards went back to bed with a headache.... I realised that walking just after a whole night without drinking any water is not a good idea; would be better to have breakfast and drink, wait a while to digest (blood goes to the stomach after the meal) , then take the walk.

The very worst thing for me is driving ( ie sitting up and still) in the heat; My halter monitor test showed my pulse was elevated in the supermarket .... my specialist observed that thisis a bad situation for us as you are up and moving slowly and stopping a lot, then face a queue at the end.

I came across some speculation somewhere on EDS that large hands and feet might be a sign. I don't have a link, and I do not know how accurate it is, I just mentioned it in case it sparked some idea in someone. The more ideas we look at, the higher the chance we might find something interesting.

Sometimes in supermarkets I have been so very tempted to abandon my groceries and just go home. Now I have shopping help, and it definitely makes life more tolerable.

I dont have ANY of the main symptoms of EDS, (hypermobile joints or elastic stretchy skin etc) so whilst i think that the conditions could overlap, i do not think that EDS is the 'cause' of M.E for more than a handful who have been misdiagnosed.

all the best, Justy x

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Hey Justy,

no you do not need to have any of those major symptoms. I do not either. There is a continuum apparently with those at the extreme who DO exhibit those evident symptoms and those in the middle like me ... and if it is a bell curve we are likely to be in the majority....who JUST have stretchy veins and gut issues and probably meningeal weakness,,,,, and the consequences of those which are manyfold but ....as we all know ...difficult to prove or diagnose.

Sometimes in supermarkets I have been so very tempted to abandon my groceries and just go home. Now I have shopping help, and it definitely makes life more tolerable.

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Hey great idea Alex, I usually up having either a fight or a meltdown in the queue if i have to wait at all ... or shamelessly try to queue-jump lol.. Now I know why.

I try to avoid peak hours.. well I avoid them all costs , I will leave and go home rather than queu for long time. Shopping help is a great idea; i really must do that as it is such a major problem I am now realising.

I came across some speculation somewhere on EDS that large hands and feet might be a sign. I don't have a link, and I do not know how accurate it is, I just mentioned it in case it sparked some idea in someone. The more ideas we look at, the higher the chance we might find something interesting.

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I quite agree Alex; I know large feet and hands are a sign of Acromegaly .. but i think they grow bigger over time, don't start out like that... I think that is the name.. a pituitary disorder causing excess growth hormone from memory, but it usually involves a larger jaw too I think.

Let me add one more confounding thought. What is the common link between the methylation threads and this one? Vasoregulation. Methylation issues can lead to depletion of adenosyl cobalamin, and tetrahydrobiopterin (BH4). These are now suspected to be critical in making nitric oxide, and with deficiency possibly lead to production of peroxynitrite instead of NO. That means that vasodilation is strictly limited. What compensatory blood vessel restructuring or alterations in blood vessel regulation might that induce? I cannot answer that yet, but the idea intrigues me.

So EDS, ME, methylation issues all lead to failure in blood vessel regulation. I think thats a clue.

One thing we do know from blood vessel study by Vance Spence et. al. We have an exaggerated actylcholine response. That normally results in increased NO and hence vasodilation. However if we are BH4 or adenosyl cobalamin deficient it might drive oxidative stress instead.

Bye, Alex

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Thanks, interesting Alex, indeed; would you have the link or reference for the Vance Spence...article please. I iwll send it to my specialist who is kindly taking a great interest in this topic.

thanks for that Merylg ;
I not ethey mention in ther medical geneticists who cdan isolate specific genes involve in eash disease: I wonder if anyone is looking at PWME for that possililty - we do not know if it is genetic ofr knot but thsat would solve that issue.
thanks again,
Ally

EDS activist and researcher Dr. Diana ran a study to check people for abnormal stitching of the skull during infancy (I think that is the gist of it). She was looking to see if EDS people had "hydrocephalus" as infants, which lead to related illnesses later in life. She has surmised that the EDS leads to blocked up CSF in the brain. The drainage conduits are physically obstructed. She wanted to see if the big-headed babies were more likely to have dysautonomia as adults.

Not sure how this fits in the EDS constellation of symptoms, seeing as how leaks of CSF are also common in EDS patients. I guess both leaks and blockages could happen. Maybe excess pressure causes the tears, leaks?

High pressure on the brain (even if subtle) could be evidence of congenital CCSVI (cerebrospinal venous insufficiency) or increased CSF (cerebral spinal fluid) production, or the poor drainage of cerebral spinal fluid, or both. Retrospective examination of skull expansion is a necessary step to ascertain these possibilities, allowing for early treatment and the hope of avoidance of the neurological symptoms, and often disabling effects of dysautonomia (and/or multiple sclerosis). It is the author's contention that "Benign External Hydrocephalus" is not a benign condition.

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Also, Dr. Diana is a practicing optometrist (she and her daughter are both EDS patients) and she has become an amateur researcher of EDS. Her training and equipment allow her to look into the eyeballs of patients. A tool used in the field of optometry, the "OPTO MAP" allowed her to peer into the veins, showing stenosis and not enough blood supply to the brain. I wonder how her study worked out.

Chronic Cerebrospinal Venous Insufficiency (CCSVI) has been proposed as the cause of numerous neurodegenerative diseases of the brain. CCSVI is the result of poor drainage of blood (and cerebral spinal fluid to some degree) from weakened or stenotic veins usually located in the cervical area (most notably the internal jugular veins). Although current focus and treatment of CCSVI is on multiple sclerosis, CCSVI has also been implicated as a potential cause of Alzheimer's Disease and Parkinson's Disease. Additionally, patients with Ehlers-Danlos Syndrome (EDS) -- a disorder of connective tissue -- are more prone to developing multiple sclerosis than the general population. Many EDS patients are known to have weakened and abnormal blood vessels and 40 - 70% of EDS patients develop autonomic dysfunction in addition to numerous other symptoms found in patients with CCSVI. In the small subset of EDS and multiple sclerosis patients seen at Total Eye Care, the investigators have noticed a vascular irregularity (using the optomap® and examining the results under high magnification) which offers credence to the theory of CCSVI. Such objective data has been elusive, excepting for fMRI (functional MRI), ultrasound (to a limited degree) and the results of venous angioplasty. Current treatment of CCSVI involves the ballooning and sometimes stenting, of abnormally stenosed veins. The treatment of CCSVI offers hope to many patients suffering from multiple sclerosis.

This may be a new concept for you but I assure you that it is not a new concept for me.

Yes, standing still causes horrible symptoms the next day. I know about this on a visceral level because I was forced to stand still for the tilt table test (also called head-up tilt). I felt like I had been run over by a truck the next day.

I'm sure it's not intentional but many of the phrases in your posts make it sound like this is a brand new concept for everyone. It is not.

If you had said, "I did not make the connection between being upright and becoming ill the next day" then that would have been clear. If you had said, "some people do not make the connection between being upright and becoming ill the next day" then that's also true. And if you were to say, "many doctors do not make the connection between being upright and becoming ill the next day" then I would also agree. Doctors are often ignorant about Orthostatic Intolerance (POTS/NMH).

But when you say "no one makes the connection between being upright and becoming ill the next day" then I must politely disagree.

Lots of doctors doing medical research, including the Johns Hopkins folks who published a paper back in 1995, have pointed out this connection (symptoms lasting 24-72 hours after NMH or POTS triggers -- standing is one of those triggers). After my first tilt table test (back in 1995) I got a "crash course" (bad pun ) on this connection between standing and a crash on the next day. And in the years between 1995 and today, quite a few other patients have made this same discovery.

I hope this makes sense and does not sound too nit picky. I just think it's important that we don't invalidate the experience of all those patients who really do understand this connection between standing and feeling crappy the next day.

Again, I'm so sorry that your doctors did not help you to see this connection earlier.

Edited to add: I'm not trying to say that standing too much is the only reason that someone might "crash" the next day. But it is a well known reason for a crash. It's not something brand new.

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Thanks for that Ahimsa, yes i may have been careless with terminology.
But also yes, it took may years for me to see the connection alas.

But could I add the question: as anyone investigated to see if being upright - sitting or standing - may possibly cause ALL our problems. I reiterate my situation that when I lie down for long enough my symptoms entirely disappear, and when I stand up for long enough they come crashing back. I would like to know if anyone has studied this to see if say someone who lies in bed totally for say , 2 weeks and then does vigorous exercise in bed still gets PEM... from which we could conclude that the being upright causes sometihing to happen in our brains or elsewhere that eventually leads us to develping PEM.
And to put it another way I think.. does being upright cause all our problems... another way of testing it too would be interesting.

On reading this i realised two other symptoms I have .. flat feet ( which my father also had) and rice paper scarring I think it is called; I have a couple of cut that healed up with a large soft white area of skin in them and read that is a symptom of EDS... I always thought the one on my knee was because I should have had is sutured that it had such a wide scar for no apparent reason, but it could be this.
)Why do flat feet disqualify you form the army does anyone know?... Is that even true?)

....
But could I add the question: as anyone investigated to see if being upright - sitting or standing - may possibly cause ALL our problems....
And ot put it another way I think.. does being upright cause all our problems... another way of testing it too would be interesting.

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But not all ME patients have OI, so even if that could be true for some, it would have to be a subset of ME patients.

Also, how do you fit in the viral and bacterial infections that so many of us have, the abnormal immune function, the often sudden onset of OI that many report? Problems with connective tissue that increase with aging, do slow slowly, not overnight.